Children with rare lung diseases need care only the most experienced pediatric pulmonologists can provide. Because of the large number of patients seen in the Division of Pulmonary and Sleep Medicine — more than 14,000 a year — we have more experience treating children with rare lung diseases than hospitals that see fewer patients. U.S. News & World Report has consistently ranked the division among the best in pulmonary care, including putting us on its 2023-24 Honor Roll of Best Children's Hospitals.

When you are looking for the best hospital to treat your child's rare lung disease, consider these factors.

Holistic approach to care

Rare lung diseases often bring with them related problems. In addition to focusing on your child's lungs, our dedicated Rare Lung Diseases Center gives your child the direct access they may need to other specialists. We think about every detail of your child's health and well-being. What does this look like?

Our approach includes an initial clinical exam by a pulmonologist along with a dietitian, as needed. Many children with severe lung disease also have trouble gaining weight and growing. For children who also have a cardiac condition, such as pulmonary hypertension, a pediatric cardiologist joins the team. A full range of other expert specialty clinicians are available and work closely with our pulmonary team on a regular basis.

Many rare lung diseases have a genetic component. You will meet with a genetic counselor who will explain why genetic testing may be recommended, what it entails and what to expect. Our genetic counselor will also take a comprehensive family history and discuss the risk of genetic conditions to other family members. Once genetic results are in, the genetic counselor will review them with your family and coordinate testing for other at-risk family members if needed. Our genetic counselor will also answer all your questions and support your family.

Patients come to the Rare Lung Diseases Center from all over the United States for second opinions and care. We know how daunting this can be. Our dedicated social worker helps families deal with insurance issues and the logistics of travel, as well as the emotional toll of a stressful diagnosis.

The whole team, including all the specialty clinicians, meets regularly to review the cases of patients with rare lung diseases. The team also reviews patients' lung biopsies.

Access to advanced diagnostic methods

Rare lung diseases can be difficult to diagnose. Families often get a diagnosis of “lung disease of unspecified etiology” (or cause). The Rare Lung Diseases Center ensures children have quick access to advanced diagnostic tools not available elsewhere, allowing for accurate diagnoses and optimal treatment.

We have a state-of-the-art Pulmonary Function Test Lab, which offers the full range of breathing tests, and our Pulmonary Advanced Diagnostic Center, which is pioneering robotic and minimally invasive (nonsurgical) methods of bronchoscopy.

Genetic testing may also be a path to a diagnosis. The program works closely with the genetic counselor, Roberts Individualized Medical Genetic Center and Center for Applied Genomics to identify the most appropriate genetic test(s) and to interpret the results.

These tools help our pulmonologists accurately identify a child’s specific rare lung disease and its features, opening up the option for novel targeted and tailored therapies.

Unparalleled research

The Rare Lung Disease Center’s robust research arm is active in basic science research (lab work to uncover the biology behind rare lung diseases) and in patient-orientated research (determining which treatments have the best outcomes).

Our research aims to:

• Discover the novel genetic basis of rare lung diseases
• Identify and use new pulmonary biomarkers (what happens in a cell) for quick diagnosis and to figure out how the disease may progress
• Establish clinical standards of care
• Create individualized treatments based on a child’s specific disease looks (its phenotype)

We also lead collaborations across the country, such as the National Registry for Childhood Interstitial and Diffuse Lung Diseases. Because so few children have any one specific rare lung disease, it is important to work with other pulmonologists to combine what we learn so more children benefit.

The center is also an active site for clinical trials. This provides patients access to new medications as they become available, for children who meet the trial's requirements.